On 2013 Oct 24, Tom Kindlon commented:

None

On 2013 Oct 24, Tom Kindlon commented:

(rest of references)

7 Moss-Morris R, Sharon C, Tobin R, Baldi JC. A randomized controlled graded exercise trial for chronic fatigue syndrome: outcomes and mechanisms of change. Journal of Health Psychology 2005; 10:245-59.

8 White P, Goldsmith K, Johnson A, Potts L, Walwyn R, Decesare J, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011; 377:823–36.

9 McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, et al. Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis. PLoS ONE 2012; 7(8):e40808.

10 Haywood KL, Staniszewska S, Chapman S. Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. Quality of Life Research 2012; 21:35-52.

11 Collin SM, Crawley E, May M, Sterne JA, Hollingworth W, UK CFS/ME National Outcomes Database ME. The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME National Outcomes Database. BMC Health Services Research 2011; 11:217.

(By the way, the reason I deleted another comment on this paper was simply because PubMed Commons had posted the same comment by me twice)

On 2013 Oct 24, Tom Kindlon commented:

Objective outcome data from the chronic fatigue syndrome specialist services would have been interesting

It is disappointing that Crawley et al.¹ presented no objective outcome data from the six chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) specialist services; an audit of Belgian CFS rehabilitation centres that used cognitive behavioural therapy (CBT) and graded exercise therapy (GET) found that, while improvements were reported with various subjective measures, no change was noted with exercise testing.^2-4 Moreover, there was actually a decrease in average hours in paid employment, from 18.3% of a 38 hour-working week to 14.9%.

Discrepancies between subjective and objective measures have also been found in trials of both CBT^5,6 and GET for CFS.⁷ Indeed, in the PACE Trial (which compared to the specialist services reported similar improvements on the Chalder Fatigue questionnaire (CFQ) but better SF-36 physical functioning (PF) scores), although moderate sized improvements were found with self-report instruments like the CFQ and SF-36 PF, differences with more objective measures were smaller, if they existed at all.^8,9 For example, there was no difference between the CBT and specialist medical care only (SMC) groups on the six minute walking test.⁸ And no difference between SMC and both CBT and GET in terms of employment losses, overall service costs, welfare benefits or other financial payments.⁹

Research on patient-reported outcome measures, and measures of improvement that CFS patients consider important, is underdeveloped.¹⁰ Given the known considerable impact of CFS/ME on productivity and employment in those attending such services, it is reasonable to speculate that many patients, and indeed other taxpayers, would find employment data of more interest.¹¹

References:

1 Crawley E, Collin SM, White PD, Rimes K, Sterne JAC, May MT, et al. Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM first published online March 28, 2013 doi:10.1093/qjmed/hct061

2 Rapport d’évaluation (2002-2004) portant sur l’exécution des conventions de rééducation entre le Comité de l’assurance soins de santé (INAMI) et les Centres de référence pour le Syndrome de fatigue chronique (SFC). 2006. http://www.inami.fgov.be/care/fr/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf. Accessed March 30, 2013 (French language edition)

3 Evaluatierapport (2002-2004) met betrekking tot de uitvoering van de revalidatieovereenkomsten tussen het Comité van de verzekering voor geneeskundige verzorging (ingesteld bij het Rijksinstituut voor Ziekte- en invaliditeitsverzekering) en de Referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS). 2006. Available online: http://www.inami.fgov.be/care/nl/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf. Accessed March 30, 2013 (Dutch language version)

4 Stordeur S, Thiry N, Eyssen M. Chronisch Vermoeidheidssyndroom: diagnose, behandeling en zorgorganisatie. Health Services Research (HSR). Brussel: Federaal Kenniscentrum voor de Gezondheidszorg (KCE); 2008. KCE reports 88A (D/2008/10.273/58) https://kce.fgov.be/sites/default/files/page_documents/d20081027358.pdf Accessed March 30, 2013

5 Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychological Medicine 2010; 40:1281–1287.

6 Knoop H, Prins JB, Stulemeijer M, van der Meer JW, Bleijenberg G. The effect of cognitive behaviour therapy for chronic fatigue syndrome on self-reported cognitive impairments and neuropsychological test performance. Journal of Neurology, Neurosurgery & Psychiatry 2007; 78:434-446.

(references continue in next message)

On 2013 Oct 24, Tom Kindlon commented:

Objective outcome data from the chronic fatigue syndrome specialist services would have been interesting

It is disappointing that Crawley et al.¹ presented no objective outcome data from the six chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) specialist services; an audit of Belgian CFS rehabilitation centres that used cognitive behavioural therapy (CBT) and graded exercise therapy (GET) found that, while improvements were reported with various subjective measures, no change was noted with exercise testing.^2-4 Moreover, there was actually a decrease in average hours in paid employment, from 18.3% of a 38 hour-working week to 14.9%.

Discrepancies between subjective and objective measures have also been found in trials of both CBT^5,6 and GET for CFS.⁷ Indeed, in the PACE Trial (which compared to the specialist services reported similar improvements on the Chalder Fatigue questionnaire (CFQ) but better SF-36 physical functioning (PF) scores), although moderate sized improvements were found with self-report instruments like the CFQ and SF-36 PF, differences with more objective measures were smaller, if they existed at all.^8,9 For example, there was no difference between the CBT and specialist medical care only (SMC) groups on the six minute walking test.⁸ And no difference between SMC and both CBT and GET in terms of employment losses, overall service costs, welfare benefits or other financial payments.⁹

Research on patient-reported outcome measures, and measures of improvement that CFS patients consider important, is underdeveloped.¹⁰ Given the known considerable impact of CFS/ME on productivity and employment in those attending such services, it is reasonable to speculate that many patients, and indeed other taxpayers, would find employment data of more interest.¹¹

References:

1 Crawley E, Collin SM, White PD, Rimes K, Sterne JAC, May MT, et al. Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM first published online March 28, 2013 doi:10.1093/qjmed/hct061

2 Rapport d’évaluation (2002-2004) portant sur l’exécution des conventions de rééducation entre le Comité de l’assurance soins de santé (INAMI) et les Centres de référence pour le Syndrome de fatigue chronique (SFC). 2006. http://www.inami.fgov.be/care/fr/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf. Accessed March 30, 2013 (French language edition)

3 Evaluatierapport (2002-2004) met betrekking tot de uitvoering van de revalidatieovereenkomsten tussen het Comité van de verzekering voor geneeskundige verzorging (ingesteld bij het Rijksinstituut voor Ziekte- en invaliditeitsverzekering) en de Referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS). 2006. Available online: http://www.inami.fgov.be/care/nl/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf. Accessed March 30, 2013 (Dutch language version)

4 Stordeur S, Thiry N, Eyssen M. Chronisch Vermoeidheidssyndroom: diagnose, behandeling en zorgorganisatie. Health Services Research (HSR). Brussel: Federaal Kenniscentrum voor de Gezondheidszorg (KCE); 2008. KCE reports 88A (D/2008/10.273/58) https://kce.fgov.be/sites/default/files/page_documents/d20081027358.pdf Accessed March 30, 2013

5 Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychological Medicine 2010; 40:1281–1287.

6 Knoop H, Prins JB, Stulemeijer M, van der Meer JW, Bleijenberg G. The effect of cognitive behaviour therapy for chronic fatigue syndrome on self-reported cognitive impairments and neuropsychological test performance. Journal of Neurology, Neurosurgery & Psychiatry 2007; 78:434-446.

(references continue in next message)

On 2013 Oct 24, Tom Kindlon commented:

None